We spent the day at Woodfield Mall while Michael completed a merit badge at the Microsoft Store. Trying to keep Miss Lizzie occupied at a mall for 3 hours is a challenge, but the bathroom situation is enough to make a special needs mom cry. I know, I almost did.

It’s about a 40 minute drive to Woodfield for us, so by the time we arrived and Michael was settled in his class Miss Lizzie was gagging herself. For those who don’t know Lizzie, this is a sign she needed to be changed.

This mall is massive and multi-leveled. Just finding a public bathroom was hard enough. Getting to it with a wheelchair was a challenge. Ramps here go partway. Ramps there go partway. There are elevators that only go to certain floors. Having never negotiated this mall alone, I found trying to do it with a wheelchair daunting. I was frustrated to say the least. Then I finally get in the bathroom to find three stalls and a sink, and zero extra room. The handicapped stall was an insult. Not even big enough for Lizzie’s chair alone, and no hope for getting the door shut for privacy at all. I apologized to Miss Lizzie for extending her wait and immediately left the bathroom. A lady who saw us going in a moment before asked with concern, “It’s not working?” I said, “Not for us.” Bearing down on Lizzie’s chair, I tried to find another bathroom.

I decided if the public mall washroom was that bad, maybe I would try a department store. We went to the closest which was JC Penney’s. The Penney’s washroom was on the second floor of their store, so up in their elevator we went. We found the washroom. The entrance to the bathroom was lined on both sides with sinks that were barely far enough apart to get her chair through with no one there. If there had been someone else it would have been a traffic situation, one of us moving out of the way for the other. The bathroom had only one stall in use. The handicapped stall. So I pulled Lizzie down the hall between the stalls. I noticed there was another handicapped stall, but that one was not big enough for her chair let alone me with her. With no one else in the bathroom, we went to the end of the aisle and I pulled Lizzie’s liner diaper out the leg hole of the shorts she wears under her pants. If she is just wet, this is how we sometimes deal with the bathroom situation. She was not just wet, and now I knew we had a mess on our hands. So the person in the handicapped stall came out. She was carrying an item on a hanger, don’t know what that was about and had no time to question it. I threw open the door to that handicapped stall, and noticed there was enough room for Lizzie’s blanket on the floor. It felt like a jackpot to me.

I carry a very large picnic blanket with me for these occasions. We make do on the floor when we have to. Moving all of our bags and my wallet off of Lizzie’s chair and into the stall, I set up her blanket and her on the floor. Then I closed the door and changed her. Her on the floor me bending over and fearing that someone would take or mess with her chair which was out of my sight.

During the change, I could hear another mother come in. She was explaining to her daughter that she was three and could not fit on the changing table and that was why she should be potty trained. I wanted to tell her to try changing an 11-year-old with lady issues who can not stand to be changed, but bit my tongue. My bathroom situation was not her fault. I hoped for her sake potty training was around the corner for her daughter.

After getting Lizzie to the floor, changed and back in her chair, I felt like I had just taken an hour long aerobics class. I was thankful that at least there was enough room on the floor to change Lizzie, even though the floor should not have to be our go to move.

When we left Penney’s a few minutes later, we left by the second floor mall entrance, where immediately out the door I saw a restroom sign. I decided to go down the the hall to see what was available. I looked in the door (it was too crowded to take Lizzie in when we didn’t need it) and I saw a couch in there. I also noted a family bathroom outside of the ladies’ room. I made note where this bathroom was in case we needed it again, but with it being on the second floor and the Microsoft store on the first, it wasn’t ideal. I mean, with Lizzie in diapers is one thing, but I was thinking about those people who can actually use a toilet and would have to come all the way up here to get to one that was usable.

Michael finished his merit badge some time later. On our way out of the mall he commented that he needed to use the bathroom. Having drank a Starbucks coffee for the ride home myself, I thought he had a good idea. I told him we’d check out the bathroom before we left. This time we were in Nordstrom’s which was the store we had parked by because of the proximity to the Microsoft store inside and the proximity of the handicapped parking outside. I walked into Nordstrom’s bathroom by the Men’s suit department. I was immediately impressed by a 4 foot table mounted to the wall. I of course took advantage and changed Lizzie. I also was able to use the handicapped stall while having Lizzie’s complete chair in there with me with the door closed. Kudos to Nordstrom’s. I was thrilled. So was Lizzie who had a nice padded table and giggled the entire time I changed her. It was great for us, but I would like to say that this open changing situation often makes me think of my friends with sons and how it might not work for them.

This table was a wonderful and rare find. Sad to say that, but it’s true. One thing I truly hate about taking Lizzie anywhere is the bathroom situation. Bathrooms are horrible for disabled individuals. This needs to change. People should not have problems enjoying being out in public because they might need to use the facilities or they might have to change a diaper on someone larger than an infant. I shouldn’t have to check out the bathroom before it’s needed just so I can strategize how I can use it to accomplish what should be a simple task. It’s ridiculous. I also shouldn’t have to keep hand sanitizer on us or buy some because Lizzie can not get to a sink to wash her hands. After having been on the floor (granted on a blanket, but still), she couldn’t wash her hands!

Bathrooms for the disabled are a real problem. I’ve been having this same problem since Lizzie was 3 and too heavy/large to go on an infant changing table. That’s 9 years for us personally. And I’m sure it’s been going on since there have been public washrooms. I’m wondering when there is going to be news coverage for this problem? When are people going to be outraged that disabled people should have the ability to use any public washroom they want and that their safety and privacy in the washroom needs to be protected? Every time I hear about this transgender bathroom battle, it gets my blood pressure up. Sure they have rights, I understand that, but so do the disabled and they’ve been having restroom problems practically everywhere forever. How about rallying around them and giving them news coverage and talk show segments? How about fixing the public bathrooms so they can be used by everyone?

Today we went for Lizzie’s first professional haircut. For Lizzie, haircuts have always been a matter of necessity, starting with her very first haircut when she was 5 days old. Our neurosurgeon handed me a small Ziploc baggie full of fine, wispy curls and simply stated “Baby’s first haircut.” I still have that baggie in her baby box. Since then, I have always trimmed Lizzie’s hair whenever it would get too bushy and she would fall asleep in her wheelchair. Of course, with the weaning of the phenobarbital, she doesn’t sleep anywhere near as deep as she used to. I once was able to cut Lizzie’s hair, trim her fingernails, her toe nails and change out her g-tube button all in one session without her even moving. Now you can’t even snip one curl without her hand shooting up to her head which then starts moving. And she barely ever falls asleep in her chair. It became apparent that we would need a stylist who could work with Lizzie. On a lark, I put “haircuts” and “disabilities” into Google. An article about a place called “Pigtails and Crewcuts” popped up. They stated in the article that they were happy to see and work with special needs kids, but the location in the article was kind of a drive for us. Then I found out they had another location even closer to us. I immediately emailed them to ask if there location also worked with special needs kids. The manager called me to set an appointment. That brings us to today. Miss Wendy was awesome! We will definitely be giving “Pigtails and Crewcuts” all of Lizzie’s hair business in the future. Looking forward to our next trip. The rest is better told in pictures. Enjoy!

🙂

And so it begins.

Enjoying being pampered.

Break time!

Miss Wendy was awesome at working with moving heads and busy hands.

There were many toys for busy hands.

“W” is for Miss Wendy who cuts my hair.

Lizzie was a little more interested in tasting the princess’s dresses than putting them on the princess.

A little off the top.

Miss Wendy even managed to trim around those sensitive ears!

Loving it!

Loving the blow dryer.

And its cord!

Lots of giggles!

Loving that cord a little too much. Miss Wendy was fast with the power off switch.

I actually dread that moment when my daughter lifts her butt from her chair uncomfortably, or grabs at her pants, indicating that she needs to be changed. I don’t dread it because it’s a nasty job, or diapers gross me out, though there are times when these things might be true. I dread it because it is extremely rare that there is a bathroom able to meet our needs; where changing a diaper is not difficult or uncomfortable for at least one of us.

You can probably guess that as the mother of a special needs child, there are many challenges about being in public. There are the places where a child yelling at the top of her voice are frowned upon; the library, church, a school assembly. Places that aren’t accessible because they are simply too old to be accessible (predating the Americans with Disabilities Act); the church where my son’s Cub Scout meetings are held in the basement or the basement banquet room of one place where the only bathroom was upstairs at the other end of the main restaurant with tables too close to navigate. There are places that claim to be accessible, but aren’t really; stores with clothing racks too close together to allow a wheelchair, or underwater enclosures at the zoo that require steps down to get right up to the glass (these enclosures are older than ADA laws I believe, and let me say our zoo’s newest enclosure does have a ramp down to the glass). And there are public restrooms. Now, to the ordinary observer with no special needs you might say, I’ve seen restrooms that are accessible; they have handicapped stalls and lower, longer sinks. And yes, this is true, but even these bathrooms are not always really accessible, and I will explain why.

Let’s just begin by saying that those built-in, fold-down changing tables have a maximum weight of 50 lbs. They are made for infants and maybe toddlers. When they say 50 lbs. maximum, they mean a chubby toddler, not a 49 lb. almost 7-year-old who is twice as long as the table. These tables, while well-meaning, are a hazard to a child who almost scoots herself off the table trying to lift her butt. And some of them, with an over thirty pound child already start to sag.

In the event that there isn’t a changing table at all, changing on the floor of the handicapped stall is sometimes an option. This requires you bring along something to lay on, and hunch over your child on the floor. Also that you lower your child to the floor, and pick her back up to put her in her chair. Not an easy feat when your child weighs almost 50 lbs, and can not lift her own weight. Plus there is the added challenge of not allowing a child with a mind of her own (and strength almost greater than yours) to roll over and crawl away, on a germ-filled floor.

Then there are the handicapped stalls that are not even large enough to change a diaper in. These make me scratch my head. How, if my daughter ever did learn to use the toilet (probably when she is much bigger), will I assist her, if there isn’t even room for her to fit in the stall with her chair alone?

These things all came to me again yesterday, when a horrible bathroom reared its ugly head. We won tickets to a sporting event, and were nicely accommodated with seats in the “handicapped” section. The handicapped section was wonderful. There was a ramp to an elevated area, with a beautiful view, and nice heavy metal folding chairs so an assistant or parent could sit with the person in the wheelchair. I was very impressed. Until we had to go to the bathroom. After our seating arrangements, maybe I was expecting more, but I was sorely disappointed by the accessibility.

The bathroom was square-shaped, with two rows of stalls back to back in the middle. There was a narrow corridor around the stalls. So narrow, in fact, that Lizzie’s brakes caught against the wall twice, causing us to jam up, without much room for me to unlock her brakes and get unjammed. The handicapped stalls were located one directly in the middle of each set of stalls, without much room to maneuver into them, and if you did, the chair would be directly in front of its user, not a convenient position by any means. The stall was also not big enough for me, Lizzie, and her chair if I were to change her on the floor. Actually, I tried to pull Lizzie into the handicapped stall with me after I had changed her, and found that her chair was where my legs needed to go, and I still couldn’t close the door. If I left her chair outside the stall, while changing her, it would kill traffic flow, and still not allow me room to change her on the floor. Needless to say, this bathroom was a nightmare for the disabled. I ended up changing Lizzie (who luckily was in a good mood) on one of those fold down changing tables, which wasn’t long enough, and she was very uncomfortable on. Of course, this required me to block both sinks for other patrons, one with Lizzie’s chair (simply because there was NO WHERE else to put it), and one with the changing table. I will be writing a letter to the stadium to let them know of our disappointment. What really surprised me is that this bathroom was located directly across from our seats in the handicapped accessible section, making me wonder if they thought it was accessible.

This is what a truly accessible bathroom should have. At least one handicapped stall that is large enough to accommodate the wheelchair, it’s user, and an aide (because some handicapped people need help to maneuver). The door to this stall should be able to swing all the way open, and have room to maneuver a chair around. The stall should also allow for the chair to be in a position to transfer across. The corridors in these bathrooms should be large enough that a wheelchair (and my daughter’s chair is pretty narrow), can navigate without getting jammed up. It would also be nice if instead of these little fold down tables that some kind of counter or bench be provided for those who need to be changed. This bench ideally would be in a separate area (stall, or at least partition), but not necessarily, I’ll take what I can get.

I’m sure it will be many years, if ever, until these accommodations are found in most establishments. I dream of those days. I make note of when I find a good washroom and make sure to patronize these locations, because if they are considerate enough to accommodate our needs it makes taking my daughter out in public a pleasure. I do not wish to keep my daughter at home all the time. We want to be out and about without limitations, like other families. Like that children’s book says, “Everybody Poops.” We just want to be able to take care of that while we’re away from home, just like everyone else.

From the time I was little, I remember people using the term, “I saw red,” meaning they were extremely angry about something, but I’d never experienced it myself. I saw a friend go through it once. We worked in a doctor’s office together. After checking in half a day’s schedule of patients, and making excuses for a very late doctor, she called the main office to find out that no one told her the doctor was still on vacation and wouldn’t be back till the next day. I saw the look on her face. If she were a cartoon, steam would have shot out of her ears. I knew that day what “seeing red” meant: that black cloud that fell over her face. But I never experienced it first hand, until after my daughter was born.

As a parent of a special needs child, you get used to comments on your parenting and unsolicited advice. You endure the well-intentioned friends who suggest a medication or a school that would be “better” for your child. You smile and nod your head at the people in the store who tell you what you should do about problem “a” or problem “b” with your child. You bear with the clueless hospital staff that tells you to do what you’ve done, or try something you just explained you have tried. And you grit your teeth and bear what the “Schmuck” says about you to others. Maybe you don’t want to make a commotion, or be rude. Or maybe you don’t want to upset other people who are not at fault. Or maybe you’ll actually file away some of the meaningless gobblety-gook they serve up for a later doctor discussion. But, there may be times when holding your tongue is not what you should do.

Today’s story is about the Schmuck and the first time I “saw red”. Let me set the scene. We were at a mutual friend’s party, it was a cold October day, and the party was in the garage. My children were with me. I don’t remember if my husband was there. If he was, he was off with the men-folk somewhere talking about power tools and landscaping, and not getting blamed for anything. My daughter, a few months old, wearing a heavy snow suit, a heavy blanket, and parked in her stroller by two powerful space heaters (no not close enough for danger, but close enough to be in the warmest spot in the garage), was within my sight, and being checked regularly (read every 5 minutes), to see if her hands and face were warm, but not too warm. I had to go to the bathroom (when you gotta go, you gotta go), and I felt bad leaving her alone for even those 10 minutes (I had other Moms I was sitting with watch her while I was gone). I was coming back down the stairs when I heard the Schmuck say to some new parents, who on arrival brought their baby in the house, something about a baby who was sickly. I felt bad for those parents, I even thought about saying a prayer for the family. Then I realized it was my daughter he was talking about. He ranted for a few minutes about how I was doing all sorts of wrong things, and then concluded with, “Some people really shouldn’t be parents.”

Tears sprang to my eyes, but didn’t come out because that’s when I literally “saw red”. Yes, it really happened. I was stunned, insulted, and just downright outraged. I said nothing to the Schmuck. I don’t think he even knew I was in the house. I walked out the door, and back to my daughter. It was a different time. I was just getting my footing as a special needs parent. There is no rule book. There are no guidelines. No two special needs parents arrive at the same place at the same time. Special needs parents will understand this… there are many towns in Holland, and some are closer to the border. I am now smack in the middle of that beloved tulip-filled country. Back when I had my run-in with the Schmuck, I was as close to the border as I could be and still trying to find my ticket to Italy.

If I were to hear a comment like this now I would have schooled the Schmuck. First of all, my daughter was being well-cared for as evidenced by my behaviors listed above. Second of all, my daughter was not sick. She had a birth defect which caused developmental delays. Read again, NOT SICK. Or sickly, whatever that means. Third, there were a bunch of pre-teen girls at the party who looked at my daughter like she was a doll. Should I have left her in the house with them? Fourth, I have another child, who was in the yard off the garage with other children. Should I have left him outside, unattended? Or should I have made him sit in the house, too? Should we all have stayed in the house alone? What’s the point in coming to the party in the first place then? How selfish of me, I was starving for adult conversation. I did, after all, give up my job to be a full-time caregiver to my special needs child, and so hadn’t talked to an adult other than doctors, therapists or my husband for months. (It’s amazing how most people bale when you have a special child.) How dare I take one day, with my kids in tow (and my special one within arms reach), for myself.

Yeah, I would give him an earful now. Of course I speak fluent Dutch now, (still going with the Holland metaphor, people), and decided Italy wasn’t for me after all, (read, “Welcome to Holland”, by Emily Pearl Kingsley, if you don’t get these references – it’s an essay handed out to many new parents of special needs kids, and I wish I’d written it, it’s that brilliant).

Back then, I just held it in, wondered if I should feel bad about myself, and held a grudge. Oh, yeah, to the “Schmuck”: I’m still holding that grudge, that’s why I still remember this in as much detail as I do. Of course, my husband doesn’t remember, and doesn’t get why I still don’t like this guy. Hmmmmm. I wonder.

Last weekend we went to a really cool event called the Abilities Expo. This event brings together equipment vendors, groups, and resources for disabled individuals to one venue where the people who need them can then view, try-out, and access these resources. What an awesome idea!

We saw several different vehicles modified for wheelchair transport, a valuable thing for a family hoping to get a new vehicle in the next year, and not wanting to trek out to various vendors separately to see what’s available. The one we liked the best was a Dodge mini-van with a fold out ramp in the rear. It allows for 7 passengers including the wheelchair passenger. This will make us much more valuable in the Cub Scout car pool. Also, it allowed for Lizzie to be in the middle right behind the front seats, where either driver or passenger in front could access her easy. Awesome, since I spend equal time in both seats. We are excited about this being a mini-van, because the fuel economy on our E350 frankly is not very economical at all, and I would love to be able to park a much smaller vehicle on a regular basis. The only thing I’m not sure about is getting a rear entry vehicle, as we’re used to side entry, but I guess we’ll get used to this as well. I just wonder how parallel parking will work when someone parks on our tail. Hmmmm.

Look at me!

I also learned of things that we did not know existed. Lizzie tried out a special needs bicycle at the Creative Mobility booth, which her brother enjoyed pushing her around in very much. It could work on Lizzie power or another person’s, allowing us to decide who had control. I also loved seeing that there was a bicycle with a wheelchair-like seat on the front of it so I could ride and have her right there with me. Something that would be good for both of us. Unfortunately, as with most special needs equipment, both of these items were highly expensive, and will require either insurance approval or fund-raising on my behalf.

There were many different equipment displays. We checked out rail lifts by several companies that would allow us to move Lizzie from one room to another. We will probably need one of these in the next couple years as Lizzie gets older, bigger, and heavier. We did find out that most insurances do not cover these, and I will be busy in the near future trying to figure out if ours will, or where we can go to get help with this. Again I may need to look into how to fund raise on our own.

We also saw many booths of wheelchairs, including ones for sports, ones that lifted the user to a standing position, and just about every other need. We saw wheelchair accessories. There were spill proof trays, and bags and wallets made to fit walkers and crutches. They also had tools for reaching, and grabbing items, opening jars and magnifying text.

There were walk-in bathtubs, adaptive showers, and assorted bath seats. We especially liked the Aquatech Bathlift, that lowered the user into the water almost all the way, but raised up to the level of the tub to allow for easy removal from the tub. This seemed more beneficial to Lizzie that she would be in the water instead of hovering just above it like in her bath chair now.

We also saw a cool line of greeting cards called CRIPmark. They were all disability themed and featured people in wheelchairs, with crutches, with leg braces, etc. I thought it was a wonderful idea. They all had wonderful artwork, and a sense of humor, something we all need from time to time. One of my favorites, was a simple card with LOVE spelled out in sign language, and a blank card inside.

In the final row, we came across an awesome booth of clothing called 3ELOVE. Their name is explained by their mission statement, “Embrace Diversity. Educate Your Community. Empower Each Other. Love Life. ” Their logo is a really simple wheelchair design, only instead of a familiar round wheel, there is a heart. My favorite shirt, which I’m going to buy for Lizzie, says, “I love life”, substituting their logo for the word love. I love it! It is so true of my daughter. No matter how much happens to her, Lizzie always rises above, and comes out smiling.

There were legal and service booths, offering advice and information. And along with the useful information, there was also some entertainment by way of a demonstration of wheelchair rugby, and an all abilities climbing wall. I am ashamed to say I could not even get half way up the “easy side”. Proudly, my 10-year-old scaled the “difficult side” all the way to ring the bell, despite a missing hold.

I saw so many things I would have loved to buy at the Expo. Many of which will have to wait until insurance is approved, or money is raised, but it’s nice to know they are available. I am so glad we checked out this event, and definitely recommend it to anyone with special needs, or who loves someone with special needs. It’s an event that will definitely grace our calendar next year, hopefully finding us in a better situation to get some of those items.